Currently, the only "semi-cure" for sickle cell disease is a bone marrow transplant. However, not everyone is able to find a match or afford the surgery. Plus, surgery of any kind has risks associated with it. As you may have heard, though, many researchers are starting to take a closer look at gene editing, and people like Ceniya Harris -- a 9-year-old Boston resident, as reported by Scientific American -- are a major reason why.
According to Scientific American, Ceniya has SCD, but has never once experienced a crisis or any other side effects of sickle cell. "The secret to Ceniya's good fortune lies in a second genetic mutation she inherited -- one that limits the aberrant curving of red blood cells," reports the science and technology magazine. "This unusal combination of genetic alterations means that she has yet to suffer a sickle-cell crisis, and her doctors believe that she will probably be protected form the effects of the defective hemoglobin for the rest of her life."
Basically, researchers would like to duplicate the process that happens with Ceniya in other SCD warriors to help lessen the effects of SCD. Scientific American makes it clear that this isn't a complete cure, but that "the compensatory treatment would spare many of the 300,000 infants around the world who are born every year with sickle cell." This, of course, could take many years to achieve, but the fact that Ceniya's body does what it does is fascinating and hopeful.
Even though this technology isn't quite ready yet, there is still a way that you can mitigate the effects of SCD now: Xickle, an all-natural supplement (which is currently in clinical trials to be classified as a drug) made from cloves, pepper, and sorghum functions by reducing the clumping of red blood cells and by maintaining the shape of those cells, even in low oxygen conditions, consequently helping to lessen the effects of sickle cell.
We like to talk a lot about the various ways you can reinvigorate your sickle cell awareness campaigns, inject more fun into your fundraising, and just generally help the warriors of the world, whether you personally know them or not. Here, in the U.S., some of our favorite campaigns have been #BoldLipsForSickleCell, #SpeakOnSickleCellObama, and #SleevesUp.
Recently, we also learned about a new movement out of the UK called #ImOnIt. A collaboration of the African Caribbean Leukaemia Trust and NHS Blood and Transplant, this campaign seeks to raise awareness about the importance of minorities in the UK, especially black and mixed race people, to donate their blood, organs, and stem cells.
According to The Voice, a British newspaper geared toward the British Black community, there's also an accompanying short film featuring various UK celebrities calling for people to join the cause. The Voice reports: "During the video, the celebrities speak directly to camera and call on people to say 'I’m On It' and register to become a blood, organ, and stem cell donor. Alesha Dixon, in her support of the campaign, said: 'As a community we need to stand together and make a change to ensure anyone fighting an illness where a lifesaving donor is needed, has the chance to receive the ‘gift of life'. If we all say #ImOnIt – this will take us closer to that becoming a reality.'"
Check out the video about the campaign below, and to our UK friends reading this, let this be your #MondayMotivation to get on it.
Last month, we highlighted a few women pioneers in the field of sickle cell research. Of course, there are many more than the five we listed there -- one of them being Yvette Fay Francis-McBarnette.
One of the most prominent sickle cell researchers of the 20th century, Francis-McBarnette passed on March 28. In her 89 years on this earth, though, she accomplished a lot. She became the second Black woman ever to go to the Yale School of Medicine; she was appointed to Nixon's White House advisory committee, where she helped bring about the 1972 National Sickle Cell Anemia Control Act; and she started the Foundation for Research and Education in Sickle Cell Disease with two colleagues; among other things. "She was breaking ground as a woman -- and especially as a black woman -- at the very beginning of the civil rights movement," reports The New York Times.
We honor her lifelong commitment to improving the lives of sickle cell warriors, and hope her story inspires others to continue this necessary work.
To learn more about Yvette Fay Francis-McBarnette, check out the full New York Times article, here.
Even as recently as the 1970s, children with sickle cell weren't expected to live beyond their teen years. Now, however, many warriors are living well into adulthood and even old age -- and the healthcare system isn't ready. Many primary doctors don't specialize in sickle cell and consequently aren't as well-equipped to handle the needs of those adult patients.
In an interview with The Washington Post, Janoi Burgess, an adult living with SCD, recalls his own transition into adult care at the age of 21. According to the article, Janoi was "'bounced around' to various primary-care doctors for adults, none of whom seemed well versed in the details of his condition." The report continues, saying that during a crisis a couple of years into his transition, Janoi's only option was to go to the ER, where he wasn't seen for a long while, since his issue was pain and that's not seen as more important than other emergencies. Janoi tells The Washington Post, "One doctor even said, "Your labs are okay, so you're not in pain."
Fortunately, more and more hospitals are starting to catch on to the need for a more structured transition process that includes the patient, the parents, and the adult doctors, but there's still a long way to go. If you are an adult -- or almost adult -- dealing with your own transition away from pediatric care, be sure to educate yourself early about your condition and learn to speak up for yourself and ask questions during your doctor visits. Check out the following resources to get you started. If any of the places listed are located near you, they may be affiliated with your children's hospital, providing for an easier transition:
